A new era, a new life?

I started putting on weight when I was two weeks old and no one really noticed as they thought it was just baby weight until a Health Visitor realised I was the weight of a 1 year old at five months!

I was referred to the children’s paediatric department where they did many tests and also sent my blood off to Cambridge but no one could figure out as to why I was putting on weight and at that point I was only on milk so it wasn’t like I was getting a packet of digestives from the kitchen!

At 3 years old I was left in India with my Nan and Grandad as it was thought that maybe the hot weather would help me to lose weight: I didn’t lose any weight. It was a struggle growing up as I never really understood why my brother got the coco pops and I had the bran flakes or the Weetabix! I honestly used to think my mom loved my brother more than me.

By the age of 8, I was doing Slimming World. I was going to after school swimming, dancing and MEND classes twice a week, which is an obesity prevention and treatment programme for children and young people. My mom and I would learn to choose healthier foods and spend more time being active. While other kids were busy being kids, I had to step up, grow up and start calorie counting.

So I was doing everything that I could to try and lose weight. Even though I ate a balanced diet and was very active, I seemed to gain weight and not lose any. It was quite frustrating, not going to lie, hearing the echoing voices around you telling you to do this that and the other. I was always the culprit because obviously if I didn’t overeat or if I wasn’t being lazy according to everyone, then how was I gaining weight? By the time I had gotten in to secondary school I had to learn to block out people who were either making fun or laughing at me.

By the age of 12 someone recommended I go on the Cambridge Diet and because I was a lost sheep who just wanted something to work, I went along with it. I would take my Cambridge shake in a bottle and pretend it was just an ordinary milkshake without letting anyone know what I was doing. I hardly lost anything and at that time Brenda, my Dietician, was shocked and was certain something was wrong. But at this point my life took a big turn.

At 13 I was diagnosed with a rare lung condition. The main focus became my lungs and not my weight. Which thinking back, it blows my mind how most people who are sick lose quite a lot of weight and I was quite ill for a very long time, hardly ate anything, yet I lost a lot of hair but not any weight. I would experience diarrhoea up to 15 times a day but my Doctors didn’t believe me, as for someone to experience this everyday how could I have not lost any weight?

My blood, my moms and dads was sent to Professor Farooqi, along with our saliva samples when I was 17.

I was called to Cambridge and told I had rare genetic condition and this was why my weight was the way it was. I have a condition called Leptin Receptor Deficiency.

My lung condition was getting worse and I was told I had a year or two to live at the age of 17 (I’m nearly 23 now… Praise God). We asked for a lung transplant but due to my high BMI it was too risky. They said if I could get my weight down that would take some of the pressure off my chest.

I was then put on the Cambridge diet for a whole year. Yes that’s right a WHOLE YEAR! I had a shake for breakfast and lunch and then one small 300 calorie meal for dinner. Throughout the whole year I think I lost about 2 kilos. I had tried my best to lose weight but as I am on daily steroids I’m going round in circles trying to lose weight but then gaining weight with steroids. So it was like a Catch 22 as I can’t exercise a lot because of my lungs.

There were then discussions of a gastric band. I had battled against this for a very long time as I knew what I ate and I knew that I did not overeat. But under pressure I gave in and accepted the fact that maybe it could help? I mean, I didn’t have much to lose? The only other option I had was to die! So, at the age of 18 I had a gastric band. For so long I felt like I had to keep it a secret, because I thought If I tell people I would get judged, maybe they will think she can’t control her eating that’s why she had it? But I have learnt to be confident in myself and I know what I do and what I go through. So no matter what anyone may think, I learnt to trust myself.

But even after the band I hardly lost anything. I was told by Professor Farooqi in Cambridge that it wouldn’t work as this problem wasn’t my fault! But at the time I felt I had no other option but to give in and try it as Professor Farooqi’s team we’re currently working on finding a cure and making a medicine to help, but they said it could take anything from 2 - 20 years, and at that time I didn’t have a guarantee that I would still be here!

Then 2 years ago I was called to Cambridge and told that Professor Farooqi and her team had a Trial drug which has worked for a few other patients who had similar conditions as myself. They were going to fly me to Germany but due to my lungs not being great, Professor Farooqi got the permission for me to have this treatment in England. This meant that I would be the first person to receive this treatment in England. I am now currently sitting here on 27th February 2018, by the grace of God, and the first dose has been given.

We would like to thank colleagues who refer patients to GOOS, research collaborators, funding bodies, former members of the GOOS team and the patients, families and volunteers who support our research.